The decision I have to make is tearing me up

Posted by dbearb @dbearb, Feb 9 11:43am

12 months ago I started going to TRT place for access to peptides.
I got tested and my PSA was 3.7 went through questions about family history with cancer which had none. So I started getting blood work every month and for 7 months my levels went down a little bit but back to 3.7> So got checked and advised prostate was slightly enlarged but due to numbers had biopsy. 1 out of 12 and 3+4 Gleason score was results the 1 was higher up on prostate. Just completed MRI and going in for results in two days. I am really going crazy trying to determine if I really need to have surgery and be done with it or radiation but from reading articles that might be not a good decision. I am 56 yoa and want to get possibly more that 10 more years to play with new grandchild. Not sure if I'm asking to early about what people have done in my position and any regrets, they have for having surgery. GOD speed.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

You still need to get some more data before making a decision. Usually, you want to treat a 3+4 case but you might have a low Decipher score and you might not have some high risk factors such as cribriform pattern, perineural invasion, intraductal, seminal vessel invasion, or an extraprostatic extension. A 3+4 can go on active surveillance if you don't have any of these risk factors. But if you do, then you want to consider radiation or an RP. See my bio for more details.

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I would not trust a TRT clinic to give advice or medical care for PCa. Hope you are now being treated by a Urologist.

You are likely at a very early stage in the process. There are many steps to go thru and waiting is tough.

It seems very promising that you have a doctor that has ordered an MRI. My former urologist did not, I had to seek care elsewhere.

Options are active surveillance or treatment. Treatment is surgery, radiation or focal therapy.

It's not easy deciding next steps. There's a chance you won't even need treatment now, active surveillance is an option for many. There's a chance that the lesion is small and non-aggressive, even a chance the lesion will not be visible on MRI. There's even a chance the pathology report is incorrect; my July 2025 biopsy was determined as 3+4 (by a Mayo Clinic pathologist even), but was later downgraded to 3+3 by another Center of Excellence Pathology Board. Some people choose to get a second reading of the biopsy.

I'd say next steps are to have your doctor order a Decipher test on your biopsy cores. That will help determine the aggressiveness of the lesion. Then you will also want to know if you have any genetic mutations for prostate cancer, which can help you & your doctor determine next steps. You can search for "Promise Registry" for the genetic mutations test. You have to send in a spit sample and they test it, when I did it last year it was free, guess it still is.

The odds are on your side. It's tough to do, but just keep working thru the process step-by-step. Keep reading and learning, some people are lucky to have a good doctor(s) to lead them through the process and others are not...but the fact that you are on this discussion board shows that you are gaining knowledge. Smart move!

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First thing you should realize is that this is not a death sentence. Prostate cancer is more a chronic disease, Especially with the mild case you have.

I was diagnosed at 62 with a 3+4 Gleason Score. I had surgery. It turns out I was a 4+3 After the biopsy of the prostate tissue.

I found out about five years ago. I have BRCA2, which makes my cancer much more aggressive..

I’m still alive 16 years later. I’ve had surgery and then radiation and three more reoccurrence. I have been undetectable for the last 27 months. The drugs we take these days are pretty darn good and every few years a new one comes out that makes things even better.

The first thing you want to look at is what percentage of that one core with 3+4 was cancerous and what percentage was a 4. If you were looking at 10% or less of a four, then active surveillance may be what you want to do.

You could get it reviewed by some real experts. Dr. Epstein is the top guy in the country for reviewing biopsies. He does charge $500 but he will give you unlimited phone calls with him to discuss what’s going on. They will arrange to get the biopsy tissues. You don’t have to worry about that..

Here’s information on two different doctors that do reviews of biopsies.

Dr. Epstein biopsy
https://advanceduropathology.com
Dr. Zhou

Send an email to Ming.zhou@mountsinai.org to inquire about a second opinion and ask for his specific instructions for the process.

With one 3+4 you don’t want to be over treated.

Here’s some information from doctors that discuss active surveillance. You very well could fit into that if your percentage of a four is very low.

Here are some videos on active surveillance. They can help you decide whether or not this makes sense for you.

Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance. He can give you answers as to why you would or would not be a good candidate for active surveillance.


Here is a video by Dr. Epstein discussing active surveillance and more

Excellent Fred Hutch doctor video: Dr. Claire de la Calle

Active Surveillance for Intermediate Risk Prostate Cancer w/ Dr. Claire de la Calle | Ep. 288

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Hello, read your post and I can identify with your concerns...I have been biopsied (14 cores, 14 postive), Gleason 8(4+4) had a Posluma pet scan (stage4 low vol met pc), have no symptoms (beyond slight urinary urgency). I have been advised to start ADT, return for a petscan then consider RT. I am thinking of having the second pet scan first, then considering ADT . Not too thrilled with RT (or ADT for that matter). I am 72, so older than you and if I have 3 to 5 years of life as I know it as opposed to 10 to 15 of wearing a diaper and going thru manopause everyday the rest of my life....well, Im going to choose the former...that being said I might try the pill form of ADT if symptoms appear, I can always stop taking it, as opposed to the 3 or 6 month long lasting injection. Just my 2 cents, I welcome any and all comments, it has been an interesting experience!

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Im in the same situation as you. Im 57 yrs old, and I too have a gleason score of 7 (3+4). I was on testosterone for over 10yrs, and my blood test srated to show my PSA was doubling within a 8 month time period. I have a 10mm lesion they found on the MRI, and the biopsy also came back with two of the samples positive. I actually go to the doctor this Wednesday to get my decipher test result. Ive read so much material, read so many stories on this site, and it will make your head spin. Before I was diagnosed, I was for sure I was going to do radiation, but after hearing if it comes back at a later time, then surgery is almost out of the question, so im really leaning to just have it removed, and hopefully cancer free. Its in the very early stages, and it has not spread anywhere else, so i can also go one active surveillance, but then I know its still in my body. Do whats right for you my brother, but stay strong, your in a good spot, and the people in this forum are very educated, and has helped a lot of people going through the same thing.

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Profile picture for mpersonne @mpersonne

Im in the same situation as you. Im 57 yrs old, and I too have a gleason score of 7 (3+4). I was on testosterone for over 10yrs, and my blood test srated to show my PSA was doubling within a 8 month time period. I have a 10mm lesion they found on the MRI, and the biopsy also came back with two of the samples positive. I actually go to the doctor this Wednesday to get my decipher test result. Ive read so much material, read so many stories on this site, and it will make your head spin. Before I was diagnosed, I was for sure I was going to do radiation, but after hearing if it comes back at a later time, then surgery is almost out of the question, so im really leaning to just have it removed, and hopefully cancer free. Its in the very early stages, and it has not spread anywhere else, so i can also go one active surveillance, but then I know its still in my body. Do whats right for you my brother, but stay strong, your in a good spot, and the people in this forum are very educated, and has helped a lot of people going through the same thing.

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@mpersonne greatly appreciate your words. After getting alot of input I am hoping it is contained and able to try observation if possible and find me a excellent surgeon before I
do it.
Also just kicked around getting rid of it totally hopefully and start low therapy?
Really alot to think about but hope everything works out for you as well.

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Profile picture for stage4lovolmetpc @stage4lovolmetpc

Hello, read your post and I can identify with your concerns...I have been biopsied (14 cores, 14 postive), Gleason 8(4+4) had a Posluma pet scan (stage4 low vol met pc), have no symptoms (beyond slight urinary urgency). I have been advised to start ADT, return for a petscan then consider RT. I am thinking of having the second pet scan first, then considering ADT . Not too thrilled with RT (or ADT for that matter). I am 72, so older than you and if I have 3 to 5 years of life as I know it as opposed to 10 to 15 of wearing a diaper and going thru manopause everyday the rest of my life....well, Im going to choose the former...that being said I might try the pill form of ADT if symptoms appear, I can always stop taking it, as opposed to the 3 or 6 month long lasting injection. Just my 2 cents, I welcome any and all comments, it has been an interesting experience!

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@stage4lovolmetpc
You have to realize that prostate cancer today is not a deadly disease. It is a chronic disease. With the right drugs, even a Gleason eight can live for 10, 20, or 30 years. I know people that are Gleason nine that have lived 30 years before reoccurrence others 20 years.

I’m 78 and I’ve been on ADT since I was 70. I do get warm flashes a few times a day and have some brain fog as a result of the drug but you would never know I had prostate cancer for 16 years if you met me. I do run on a track twice a day a mile and go to the gym three times a week and spend an hour working on my muscles. I get bone strengtheners every three months. All of this keeps me so that I have been undetectable for the last 27 months even though I’ve had four reoccurrences.

Then you take the side of not being treated. You may live a long time or you may have the cancer spread to your bones and become painful. My father had radiation as his first treatment, but I remember the day he told me Lupron stopped working. He died of prostate cancer in extreme pain, Unable to communicate because he Had to take so much morphine for the pain. This was a guy who had his teeth ground down and crowned without Novacaine and came home at night and had dinner with us.

You could easily live another 20 years with prostate cancer as long as you get it treated and keep up with the recommended drugs. I’ve had surgery followed by radiation 3 1/2 years later, followed by Lupron 2 1/2 years after that and more drugs that have worked well. I have the genetic problems of BRCA2, which causes my cancer to keep coming back, but I’m still around.

As far as ED goes There are a number of solutions. You can get an implant that gives you an erection, They are very popular. You can get injections that allow you to get an erection for an hour or two, More than enough time.

I don’t know what you mean by wear a diaper. Most people have no incontinence after radiation. You can get a barrier like SpaceOAR, Barrigel, or BioProtect to protect your rectum from damage during radiation. Six years after radiation, I Started to have incontinence problems, which over the years have gotten worse. Never had to wear a diaper, wear a pad. I’m going to get an AUS (Artificial urinary sphincter) Installed in April, which will give me full continent back. That’s not the only device that works to do it.

The pill form of ADT is not something that you can just stop and everything comes back to normal right away. You will not feel it until your testosterone level gets very low, If you stop the pill at that point, it can take 2 to 6 months before things come back to normal. Of course, that can also cause your cancer to become more aggressive, What’s your preference?

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go down to jeff Marchi's comment- prob more articulate and complete than many doctors...you dont really have a major problem..and even if you decide on ADT therapy, it is really not as bad as many think...but get all the facts. You have alot of time to consider what to do..but dont go head in sand..

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You are early in the process and will likely have many options. I chose Tulsa Pro for my 4+3 at age 65. I had 30% of my prostate ablated and show no evidence of disease at 18 months. Zero side effects and easy procedure. Tough not to overreact at first, but do your research and do what makes sense for you and your family.

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@dbearb I'm sorry for the shock you're going through. I was also 56 at first diagnosis, but my cancer had progressed much further than yours (stage 4), and even then, I very much expect to be around to watch my grandchild (born last month) grow up, even though I'm 4½ years into this journey already.

If it's a comfort, your Gleason 3+4 is borderline, the lowest score that even counts as "cancer," and the recommendation is often "active surveillance" — basically, just keeping an eye on it. Since you caught it so early, it's not unreasonable to look forward to spending time not just with your new grandchild, but perhaps with great-grandchildren as well.

If you do decide to treat the early-stage cancer now, understand that neither a prostatectomy nor radiation guarantees a "have done with it" outcome — while there's a high chance the cancer won't recur (like over 90% in your situation, I think), it's always possible some cancer cells have already escaped the prostate and are lying dormant, waiting to start a new tumour some day, perhaps on a bone or lymph node. But since you'll be actively monitored for the rest of your (hopefully very-long) life, they'll be able to treat those as soon as they pop up, before they get big enough to cause serious problems.

Give yourself time and grace to get over the initial shock of a cancer diagnosis, then prepare to get on with your life. You've got this!

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